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With 60,000+ women a year  being diagnosed with DCIS (Ductal Carcinoma In Situ),  it is estimated that by 2020 there will be 1 million women living with a DCIS diagnosis.

The purpose of this site is to help alleviate the misconceptions, fear and confusion surrounding a diagnosis of “stage zero breast cancer,” commonly known as DCIS.  It also offers support and resources which will empower women to make informed decisions and be proactive about breast cancer risk reduction.

DCIS Redefined discusses dilemmas, choices and integrative solutions unique to DCIS.  Fear, confusion and overtreatment are life-altering problems that many women diagnosed with DCIS feel totally alone with.

DCIS Redefined provides support, personal stories, up-to-date research, integrative breast cancer prevention strategies and access to experts in the field of DCIS.

“The time is now to discuss a change in the approach to DCIS. We should be demanding change.” - Dr. Laura Esserman, MD, MBA, professor of surgery and radiology at UCSF and Director of the Carol Franc Buck Breast Care Center, UCSF

“Strong consideration should be given to changing the phrase DCIS to eliminate the ‘anxiety-producing’ term carcinoma.” - Dr. Carmen Allegra, MD, Chief of Hematology and Oncology, Shands Cancer Center, University of Florida

Please explore the website, comment and share with anyone who may be interested.

Please “like” our Facebook page or “Follow” to join our Proactive Breast Health Club and receive monthly articles on breast cancer risk reduction (on left sidebar).

Thank you!

 

 

 

26 thoughts on “Home”

  1. Lauren Mancini said:

    Excellent!

  2. Sherry Mollo said:

    I cannot figure out how to use this website to ask questions or give my personal story. I do not have Facebook or Twitter.

    • Hi Sherry,
      You can ask a question anywhere on the site where it says “LEAVE A REPLY.” You can leave you story by scrolling down to the bottom of “STORIES” and LEAVE A REPLY or send your story in 500 words or less to me at dp4peace@yahoo.com and I will upload it as “Sherry” with a drop down menu under “STORIES.” Thanks for the feedback. We want to make it easy for comments and questions. May be best to comment or ask a question within the topic you are inquiring about. Please let me know if you have other suggestions or need more assistance. Thanks for visiting the site! We look forward to hearing more from you! :) Donna

  3. Hello,

    I’m a 46 year old female living in San Francisco, CA. On 11/1/2013 I was told I had grade 2 DCIS in my right breast. I’ve had no previous breast issues other than benign lumps which caused no issues, I also do not have a history of breast cancer in my family. On 11/11/2013 I had a lumpectomy with clear margin. I’m healing well no complications. On 12/2/2013 I had an appointment with an oncologist who told me the treatment, and my treatment for DCIS was radiation and tamoxifen. I’m pre menopausal, have no menopausal symptoms. I’m terrified of tamoxifen. Anyone out there on it and would like to share her story?

    When I left the oncologist office I was left thinking I had no choice. The doctor did not give me any options or statistics, instead he referred me to radiologist oncologist for radiation, gave me a prescription for tamoxifen and told me to see him in three months. He made no mention to the horrible side effects of tamoxifen.

    So, being that I live in San Francisco and UCSF is in my backyard I’ve decided to get a second opinion from Dr. Essermans group. My instincts are telling me I’m being over treated. I’m not looking for a doctor to say I don’t need radiation or Tamoxifen but rather give me statistics . Thank you for reading my story and please let me know your experience with tamoxifen.

    • Dear Danielle,
      Not all DCIS patients need radiation and taking tamoxifen is also controversial. The Van Nuys Prognostic Index (VNPI) is one way to calculate your risk of recurrence without radiation. A newer less tested way is also the Oncotype DX for DCIS.

      In 2007 I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist,with a consulting service anyone can use. He calculated my risk of recurrence without radiation (after my lumpectomy) as only 4%. He lives in Tiburon which isn’t all that far from you. His website is: http://www.breastcancerconsultdr.com/index.html.
      Dr. Lagios also does not believe tamoxifen is of much value for DCIS patients. Check out these links on his website:

      http://www.breastcancerconsultdr.com/perspectives/tamoxifen_adjuvant/tamoxifen_adjuvant.html

      http://www.breastcancerconsultdr.com/perspectives/contradictory_treatment/contradictory_treatment.html

      Dr. Esserman on the other hand is a big proponent of tamoxifen. However,if she quotes statistics from studies, make sure you understand and ask for both the relative risk reduction benefit and the absolute risk reduction. A reduction from 4 to 2 percent might be a 50% relative risk reduction, but it is only a 2 percent absolute risk reduction.

      Anyway you do have choices. Take your time in deciding what is right for you.

      • Dear Love Tennis60,

        You are a true Angel. Thank You so much for providing me such valuable information. I’ve read his website and will use his services. I’m fortunate to have him in my backyard.

        I’ll keep you posted. :)

        Many Thanks,
        Danielle in San Francisco

  4. Sue Bugansky said:

    “Good news or bad news?” I was recalled for a second mammogram on 11/18/2013 after the first one (11/13/13) showed “suspicious calcifications”. (My previous mammogram was in August of 2012, on which nothing suspicious showed up.) Subsequently, I was referred very quickly to the same surgeon who, in January of 2010, had removed calcifications from my other breast via surgical biopsy (after core biopsy had already been performed) which were determined to be atypical hyperplasia. I saw the surgeon on November 25, 2013, and underwent a stereotactic needle core biopsy on December 2. On my followup visit to the surgeon on December 9, I received the same “good news/bad news” diagnosis that I had received for the 2010 hyperplasia diagnosis. However, this time the diagnosis was DCIS. Although I am usually a fairly calm person the word “carcinoma” is enough to send anyone over the brink–which is exactly what it did to me. Everything moves quickly in the realm of “standard treatment”, however, so I had the lumpectomy recommended by my surgeon on December 18, 2013. Since it was close to the holidays, my followup appointment is not until December 30; however, my surgeon said after the surgery that he would call me today (the 23rd) with the results. He did not call. I became more and more upset after reading various blogs, cancer sites, etc., so I called the surgeon’s office for my results. He called me back within 15 minutes with this information:

    No tumor was found during the lumpectomy. He removed scar tissue and hematoma left from the needle biopsy and generally cleaned up the biopsied area. No cancer was detected in the sample because the small area that had existed had been removed by the core biopsy. There were no “good margins” because there was nothing left to excise. I asked if I would then be referred to an oncologist to which he answered that we would discuss further treatment during my followup on December 30.

    Ok–so here is my question: Do I opt out of the “standard treatment” of 5 to 7 weeks of radiation followed by 5 years of Tamoxifen because of the small-size, no-cancer-left results? I have convinced myself that the treatment will be recommended by both the surgeon and the medical oncologist because it is “standard-one-size-fits-all” and routinely given. Before I even had my surgery, I had decided on NO radiation and NO Tamoxifen to which my family physician responded negatively when I told her. I am a post-menopausal 66-year-old female in excellent health who is very active, strong, and mentally healthy (at least until this little bump in the road). I have no family history of breast cancer. Being tied to a daily treatment for 5 to 7 weeks would be difficult if not impossible for me. I also shy away from filling my body with alien substances such as Tamoxifen. I fear the side effects and end results from both treatments, as well.

    Thanks for letting me vent even if there are no pat answers out there!

    • Sue…You sound just like me! I wqs 65 when I got the news”….I have not done the drugs nor the rads…..no decision….I just don’t “seem to get there” to be mapped! So I guess it is a decision. How are you? I am doing everything VERY healthy and trying to prevent a recurrence. I just think that rads is over kill…esp, if it comes back you are guaranteed a mastectomy. My thinking is that I will be vigilant and healthy and if it recurs, I still have the option….just Lord, let it not be invasive. The drs act like DCIS is not big deal….but then want to treat you like you are a full blown case of invasive. Would love to hear your response.

      K

      • Sue Bugansky said:

        Katrina, Hope all is well with you and you are content with your “decision”. I did succumb to the rads but not the meds. Why, you wonder? So do I! Certainly it was an inconvenience and perhaps not necessary. However, the surgeon and radiation oncologist (both men) recommended the rads to prevent recurrence just in case a small cell had escaped and would later do damage. The medical oncologist (a woman) encouraged me to enter a clinical trial, do the rads, and then follow up with tamoxifen. I went with the recommendation of the men. I went every day for 5 weeks, not 7 (took a stronger dose to shorten the agony) throughout an extremely brutal winter. Surely the stress of that (winter) and keeping an eye on my mother who lives 75 miles away were not good for my health. I had my 6-month check recently–all was well. Fingers crossed! Looking back, I am glad that it’s over and hoping I never experience anything like it again. If it comes back, I will not be able to do rads again, as you said. Guess I will deal with it then.

        Wishing you the very best.

        Sue

        >

  5. Latest study verifies your work! My lumpectomy was probably unnecessary, as I suspected…

    http://mobile.nytimes.com/2014/02/12/health/study-adds-new-doubts-about-value-of-mammograms.html?_r=0&referrer=

    • Sue Bugansky said:

      And mine–and how many thousands of others? I might have acted differently if not pressured to do radiation as well… 13 more dehumanizing treatments to go…DCIS size was minuscule. And the bills keep pouring in.

    • Joan, thanks so much for posting the NY Times article!

      Sue, the pressure is so incredibly strong to do radiation following lumpectomy. My husband told me he would have done it after our visit with the radiation oncologist. It was something I never actually could consider for myself. I researched and researched and couldn’t make sense of it. Nor could I consider mastectomy. I thought the Drs and the “standard of care” treatments of low grade DCIS were totally NUTS. My research confirmed my intuition. I found Sandie Walters (dcis without rads) and I felt better that I was not alone.

      I totally can empathize with the bills pouring in on top of it all! The stress it creates is unbelievable…and can cause more inflammation in our bodies, lowering our immune systems to fight off any “abnormal cells.”

      I am still continually pressured to have mammograms….NO WAY can anyone ever convince me that I should do this to my poor, damaged breast. If cancer ever were to develop in my right breast, it would be because of the harms done following a “suspicious mammogram”…which led to a “giant” needle biopsy with a titanium chip (unknowingly) placed permanently in my breast, excessive Dr. visits, way too many mammograms and 3 highly invasive lumpectomies (all leaving close or positive margins — which in itself is absurd). All of this “cancer treatment” was probably unnecessary)….thanks to succumbing to the pressures of having annual mammograms starting at age 40.

      All we can do now is share our stories, share important studies and inform others.

      Thanks for joining in the conversation and sharing your experience and feelings.

      Blessings of health and peace, Donna

  6. I’m so glad I found this place. My story is similar. I’m 60, been getting mamms since I was 40. A few years ago, they thought they saw something, but on other ultrasound ruled it out. I might add I was getting one years ago before that where the tech accidentally had the machine go tighter instead of looser. I jerked and had a red mark across the left breast for a week or two. This breast has been aching for years since. Fast forward to this fall. I’ve moved to a new area and have a new dr. This time they saw something, did 2nd mamm, decided needed biopsy. It was contained in milk duct, clear margins. It was <1 cm. I never felt it, but had horrible pain in that breast after the ultrasound. When the dr did the needle location thought I was going to jump off table, THEY COULDNT FIND IT. The radiologist told me it shouldn't hurt because there are no nerves in the breast. She finally stabbed it. Next surgery was sentinel lymph nodes biopsy. Nothing there. Oncotype was sent off and low score. It was estrogen pos, I don't remember other results, but one was indeterminate.When I met with oncologist and told her I didn't see point of treatment since it was tiny and all rgone, you should have seen the look on her face. She told me that death from breast cancer was a horrible way to die, she told me that if it came back in my bones, there was nothing she could do, but then when I asked about radiation side effects, she said I would have to talk to the radiologist, since she wasn't one. She asked if I didn't want treatment, why didn't i have a mastectomy ? I told her they did not give me that choice, and I reminded her that the first time I saw her I told her the breasts could go if they were going to kill me. I had no children and they've never been used. ( I do wonder why our breasts are considered "sacred " and you must save them at all costs. ) I kept telling her that since I'm 60, the likelihood that I'm going to have more health problems as I age and the treatments she was advocating would probably take me down the path quicker. She was not happy with me. The last thing she asked me was why did I get mammograms all those years if I didn't want treatment? I tried to explain to her that I was trying to do what the medical community wanted me to do and I truly believed that everything was removed. I was never so glad to get out of that place. I feel fine except that I am 60 years old. I just can't see making me sick with treatments when I feel fine now. I've never been one for taking unneeded medications. I still have pain in that breast when I am stressed. I am still scared, but I'm more afraid of the treatments. It seems weird to be getting treatments for something that is not there on the off chance that it "could" be there.Would love to have any suggestions . Thanks in advance.
    Carol D

    • Carol,
      I can empathize with your DCIS experience. They found my DCIS when I was 58. Although my journey wasn’t as painful as yours, all the doctors I talked to in my hometown wanted to do what I thought amounted to overtreatment.

      In my opinion some of your oncologist’s comments were not only inappropriate but down right unprofessional and just plain not true. You might want to talk to another oncologist who doesn’t try and scare you into doing something you obviously aren’t comfortable with. Standard of care allows for lumpectomy alone for some DCIS patients. In fact a few oncologists are suggesting active surveillance for non-high grade DCIS.

      Although your Oncotype DX score was low, which indicates your risk of recurrence is low without radiation, you could also ask a radiologist what he (she) thinks your personal risk is without radiation.

      In 2007 I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service anyone can use, to determine my odds of recurrence without radiation. He used the Van Nuys Prognostic Index to determine I only had a 4 percent risk of recurrence. Since radiation only reduces your odds by 50 percent, a 2 percent reduction was not worth it to me. (see my personal website: http://dciswithoutrads.com/).

      There are also much less toxic things you can do to reduce your odds, such as eating right and choosing specific cancer inhibiting foods, exercising more, limiting alcohol, taking certain supplements, balancing your hormones with bio-identicals, etc. (Check out our prevention pages: http://dcisredefined.org/integrative-solutions/natural-risk-reduction/).

      Also feel free to email me anytime at lovetennis60@aol.com.

      Thanks for sharing. Keep the faith. You are not alone. :) Sandie

  7. I have read the website and forums concerning DCIS without radiation or tamoxifen. I feel in my heart this is what is right for me. Thanks to Donna’s website and this one, i have requested the Oncotype DX test and Van Nuys. My oncologist encouraged me to visit again with the radiation oncologist. When I questioned her and voiced my concerns/issues, she was so defensive.

    One of my concerns is the damage caused by radiation, the unknown side effects that may surface later, and the immediate side effects. I have a fabulous trip planned for this summer which has basically kept me going. When I asked her about how this would affect my trip (fatigue, sun exposure, etc) she literally said, “You need to get your priorities straight.” and walked out the door.

    I was dumbfounded. This is a dr whose job is to be patient and listen/answer my questions and concerns no matter how trivial she thinks they are.

    At this time, I will continue to fight for my gut feeling which is NOT to go through radiation or drug therapy.

    One thing I don’t understand and she mentioned over and over was my age. I am 46. She said that all the studies and the women to do not undergo radiation are older and that my age was the primary reason to do radiation. She consulted several colleagues who all agreed… of course. Why wouldn’t radiation oncologist prescribe the same remedy?

    Is there anyone out there who is in their 40s who has had DCIS removed (lumpectomy) and did not opt to have the radiation/tamoxifen? And who is successful with no recurrence.

    • Dear Gina,
      When I was diagnosed with DCIS in 2007, I was 12 years older than you are now. I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service that anyone can use. After my lumpectomy, he used the Van Nuys Prognostic Index and calculated my risk of recurrence at only 4 percent, without radiation. Because you can only use radiation once, I opted to save it in case I ever got invasive breast cancer. The typical 50 percent reduction would have only been 2 percent for me.

      Your gut instinct to request the Oncotype DX and Van Nuys Prognostic Index tests is right on. What you need to find out is what your personal risk of recurrence is if you too decide to opt out of radiation.

      Additionally there are other less toxic ways to reduce your risks. These include diet, exercise, limiting alcohol, certain supplements and making sure your hormones are balanced.

      Keep searching until you find what is right for you. Because DCIS is non-invasive, it can not kill you. You don’t need to rush into anything.

      Please also feel free to read more of my story at: http://dciswithoutrads.com/.

      Best,
      Sandie

  8. I am waiting to hear back from pathology for results regarding my lumpectomy. I was given the diagnosis of DCIS. It has been difficult waiting. I should know tomorrow the results of the surgical biopsy. Would I have to do rads and tamoxifin (?) even when there is so much inconclusive research on whether it helps those with DCIS? Are there healthier alternatives? Thanks for your replies!

  9. Thanks fosr all the sharing! I am a 46 yoa, and I am in the process of deciding whether I will receive rads and tomoxifen, my gut is telling me no! I think the treatment is worse the cure, which the medical community does not have yet! But I do believe the homeopathic world does… I just went through 2 lumpectomies… waiting to hear I have clear margins now…
    I need advise how to ward off the doctors, cause we are not convinced this is good medicine! I have three friends who told me if they could do it again they would of skipped the rads because it did them no good in the end… I am looking into essential oil, cleansing my body and my spirit and continuing to exercise…

    • Hi Terri,

      Sounds like you are on a wonderful health-promoting, cancer prevention path! Your gut led you here and I hope you explore the site and find some excellent resources and support. I would also recommend looking at my blog http://www.dcis411.com.

      Both Sandie and I would highly recommend a 2nd opinion from Dr. Michael Lagios, a 30 year expert DCIS pathologist who offers consultations http://www.breastcancerconsultdr.com/ While he may or may not recommend radiation treatment for your personal situation (after examining the tissue, images and calculating all the factors using the VNPI), his expert opinion truly provides peace of mind no matter what you decide. He also sees no benefit to Tamoxifen and sites studies for his perspective.

      Please keep us posted and let us know if you have more questions. Be well, Donna

  10. Hello All,
    I stumbled upon your site as I was dx with DCIS on September 23, 2014. I felt that day to be the worst day of my life…I cried for two days, because all i heard was the word “cancer”, which for me is such a mean and evil disease.

    I have been reading testimonies on your site all morning and would love to recieve other information.

    I am researching my options before I schedule my first appointment…however after reading some of the stories I do not need to act as aggressive as I was told…

    I have a few questions:
    Is surgery necessary if my dx is grade “0”?
    If so…does that mean I need surgery within the next week?
    Most of the success stories stated they opt out of radiation…please shed light on reasons why radiation is not necessary.
    Are there foods I should remove from my diet?
    Should I eliminate alcohol as well?

    I am so new to this I could go on and on with millions of questions.

    Thanks so much for sharing your life journey.

    Kim from Texas

  11. Samina Arfan said:

    I would like to become a member of the breast health club please

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